A journey through the world of OI

Heading in the right direction

Well, it seems as if I have a lot of catching up to do. It’s amazing how time can get away from you. Since I have a lot of ground to cover to get through the last month I’ll pick up where I left off and try to get through everything in as orderly a fashion as I can. I’ll go ahead and admit that I don’t have a clue what all to say, so I’ll just shoot from the hip and hope I manage to relay the important stuff.

To start with I should update everyone on Megan’s last treatment. Things really went much better than we expected. We were sitting in the prep area of the operating room at Children’s Hospital being briefed on all the details of the PICC line placement when things veered off of the planned course of action. There was just the PICC line nurse and the anesthesiologist scheduled for the OR this time as a surgeon was unneccessary for the PICC line placement. About 5 minutes before the procedure was scheduled to begin, in popped the surgeon that had done Megan’s skin biopsy from her first treatment. She said that her schedule had cleared up and even though Megan was scheduled to get the PICC line she felt like we could go ahead and put the medi-port in. We were really surprised as Megan was a full half a pound shy of her 11 pound weight goal. The surgeon just poked at Megan’s baby fat a little bit and confirmed that there was enough pudge to go ahead with the port. We probably saw the surgeon a total of three minutes as she gave us a quick rundown of her plan, dismissed the PICC line nurse and described what the port was like (she likened it to a rolo). It was an abrupt change, but one we were excited about, so off we went!

Megan did really well during the surgery and within 45 minutes or so they were calling us back to the PACU (Post Anesthesia Care Unit) to sit with Megan before we could go upstairs to a room. It wasn’t very long before we shot up to the 8th floor to what’s surely (and unfortunately) going to become like a second home. After the usual parade of people and chaos that goes on in hospitals, Megan’s first treatment got underway. The next few days went smoothly (that’s easy for me to say as I was at home in my bed while Les was the one on the lumpy fold out hospital bed) even though Pete wasn’t allowed on the floor due to cold and flu season. This time though we had help from visiting grandparents and that really made things much easier. The rest of the hospital stay was uneventful and Megan got discharged right on schedule. The next time we go in will be even easier as we can skip the scary OR part of the process all together because of the port. Megan’s tiny little port is on her left upper chest just below her collar-bone. It’s not nearly as obvious and obtrusive as we thought it might be. For those who are interested I’ll do my best to briefly describe the thing. It’s essentially a small titanium bowl with a silicone hockey puck lid. The basic premise is that you poke a needle through Megan’s skin and through the silicone puck into a chamber in the bottom of the bowl that has a small catheter (tube) that runs out to just above Megan’s heart. Then you can insert IV medication and draw blood without having to stick in an IV in her arm or hand. All we have to do is go and get the thing flushed once a month. Not too shabby! It’s amazing what modern medicine can do!

That’s it for medical treatments in the last month as Megan has happily stayed free of major breaks. We suspect that she may have broken a rib or two and perhaps a finger, but nothing that would send her back to the doctor. We’ve learned that finger and rib breaks you’ll eventually lose count of, so why bother? Helpful tips on things like that have been coming from a woman that we’ve met in the Denver area who has a severe case of OI. She’s an absolutely amazing woman and has been really wonderful to have had as a resource not to mention the fun gatherings we’ve had for meals together (they stopped counting her broken bones at 100) . She’s very bright and funny and has been studying for the GRE so she can pursue a Master’s degree. The possibility of a future like that for our little girl excites me. I greatly admire her spunk and tenacity in the face of great adversity. She is 24 years old, 3′-3″ tall and weighs in at 40 lbs. Amazingly, Pete is taller and heavier at 3 1/2 years old than she is. However, having spent a little time with her I know that she’ll be able to accomplish whatever she decides to set her mind to which gives me wonderful hope. Although, before I get too far ahead of myself with all this future college business, let’s keep it simple and set our sights on solid food with a distant view to potty training.

Thanks to the generosity of so many people from all over the place, we had a very merry Christmas! Les and I kept it simple with only some fruit and nuts in our stockings, but the kids racked up! We were able to get the word to Santa about some great things for Megan based on a few recommendations from her Occupational Therapist and Pete had only been marginally naughty and was able to score on his Christmas wish list. It was truly a Christmas extravaganza complete with 6 hours of present opening as Pete likes to open something and then spend a half an hour playing with it before moving on. We loved it! The only downside to our holiday was the stomach bug and bronchitis (including a 104 degree fever) that sidelined some of our holiday revelers for a few days. Oh… that and the dog bite (Fin really is sweet though and Amanda just had it coming). The very best Christmas present may have been Megan’s Medicaid Disability coming through. There are still a few kinks that are being ironed out, but that will be a huge weight off of our shoulders once everything gets squared away. Even with what is really pretty good insurance the medical bills were piling up and we had been stalling on payments trying to get everything in order. The major questions still lingering are what Medicaid program are we even on anyway and will it backdate to Megan’s birth like it’s supposed to because right now it’s not. I’m sure that it will all work out in due time though.

The new year has found us very busy as my work is keeping me cranking away some nights and weekends right now and Les is working constantly with Megan to keep her developing at a good pace. I’ve noticed that while it seemed like there was something new each and every day when Pete was a baby, Megan doesn’t move at that break neck pace (that might have been a poor choice of words). Anyway, some of that is to be expected and Les has been working really hard and doing a wonderful job at keeping Megan progressing at a steady pace. Megan is undoubtedly the happiest baby that I’ve ever seen despite all her problems. She smiles and laughs out loud all the time now. She and Les will just sit there and play and laugh for hours throughout the day. It’s really amazing! She’s picking some things up and bringing her hands together and to her mouth. She’s starting to tug at her canula and you can see the impending battle that’s going to come very shortly.

Even though we’ve been really busy we’ve still had some time to reflect on the past year and all the things that have happened along the way. It was just last April that we first learned that something was amiss with our perfectly planned pregnancy and that seems like it has already been years ago! It has been without question the greatest year of my life! It could easily have been something different entirely as when our plans don’t work out it can be utterly crushing. It’s so easy for us to take our plans and elevate them beyond anything and anyone else in our lives. We pray, “Oh Lord, bless my plan” and use God as a means to an end as if he were the cosmic candy store. Then when our plans don’t succeed we can become hopelessly bitter, angry and broken people. In the past year I have been brought low and have had a lot of truths revealed to me. I’ve come to understand that when I have those angry and bitter feelings it’s because I believe that my plan is better than God’s. I don’t want his plan for me… I only want mine. When I begin to think that way it’s because I can’t possibly believe that God is love, that he has a perfect plan and that he works these things to my good. Head knowledge of who God is isn’t always enough to strip away my radical self-centeredness. Let’s face facts… I’m a product of the most individualistic society that has ever existed. No other culture has operated in the way that this culture currently does. When the trials of life come upon us and we’re being tested and refined in the fiery furnace… it burns (of course, it’s fiery)! We as individuals are ill-equipped to deal with these things, which is a fundamentally life changing realization. That realization can either paralyze you or set you free if you know where to look. Not being able to do it alone strips away my pride and inflated sense of self. I takes me away from worry and anxiety over being able to handle the situation (I already know that I can’t). In Matthew 11:28-29 the Lord calls us to step into the yoke with him. When you’re yoked to the Lord who does all the work? I’m able to enjoy the fellowship and closeness afforded in a yoke while knowing that I am there because of radical love. That’s not a burden… that’s freedom! If I could go back and change anything this last year in my life, I wouldn’t. Megan is the most incredible thing that has ever happened in my life and the man that I am today is hardly recognizable from the man that I was a year ago. I wouldn’t change a bit of it. My job is better, my marriage is better and pretty much everything else that’s actually important is better (I know the difference now between important and not). We have such a long way to go and much to learn, but we’re definitely heading in the right direction.

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Thank you for the updates! Once a month is plenty when you write so well…although closer relatives may wish for more. ;-) I love your honesty and openness! Little Megan Clara is growing up beautifully, the pictures are so precious, God has given her just the right parents to help her grow into the person He plans her to be! It is good to hear the port placement went well, I’m very familiar with ports in adults and it will become your best friend (in terms of making medical procedures and testing sooo much easier!). Many blessings to you!